This blog shares the daily life of a family living with two Type 1 diabetics.

Welcome

I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Thursday, September 27, 2012

"You can do this." I repeat this to myself almost every day. My daughter has not taken off her "You Can Do This" bracelet since she got it. I don't know if Kim Vlasnik, the creator of the "You Can Do This" project has any idea how many lives she is truly impacting. The power of these four simple words is huge.

I see so many diseases and so much suffering on a daily basis. It is hard, and perhaps only human, to look at every disease I see and not compare them to Type 1. I am no doubt biased, but I have yet to see a disease that requires so much hourly (secondly?) work. And, I am not sure I have found one that is so laced with guilt. This by no means makes the other diseases easy to have. But, Type 1 seems to be its own unique daily adventure.

It has been almost three years...there is no end is sight. And, the mantra "You Can Do This" sustains both myself, my daughter, and my whole family.

So many normal moments that are impacted by Type 1.

We baked cookies together the other night. I stopped doing this for at least 2 years when she was diagnosed. I LOVE to bake (cooking not so much). I missed it. I needed to bring a dessert for work, and looked in the cupboard to realize decorated sugar cookies were the only option. I didn't intend for her and her sister to help. But, they quickly realized what I was doing, and like any eager ten year olds popped in to help frost the cookies and decorate with sprinkles. I saw her lick frosting off her fingers a couple of times. Who doesn't do this when they bake? I didn't plan ahead and bolus her for this unpredictable moment. And, I truly didn't see her take that many licks.

310. The highest number we have had in weeks. "I hate diabetes," Jessica yells when she sees it. I miss when she was seven in some ways. When the numbers meant nothing to her. When she didn't understand what it meant every three months when she went to her diabetes appointments and heard the value of her HgbA1c. I hate that we can't spontaneously bake and decorate cookies without later having her feel guilty. Of course, I tell her that we only do this on special occasions, that we have insulin and it will get that number down quickly, and that this is absolutely nothing she needs to feel badly about. And, of course, in my head I think "why didn't I bolus her?" But, how do you judge how much frosting a ten year old might lick? And, when decorating cookies at 8:30 pm at night, what parent wants to guess wrong only to have her bottom out later. And, this is truly the first or second time we've done this since diagnosis, so like everything we just need to learn how to do it with Type 1 in the picture.

"You Can Do This," I tell her. It is ok to hate diabetes. I hate it too. But, we had fun making cookies, and we will get this number down quickly. And, "You Can Do This." I see her glance at her bracelet.

A vampire site (Thank you Kerri Sparling for introducing me to the term!) The needle goes in and she yelps. Blood oozes. The famous vampire site that has hit a capillary and is now sending blood dripping down her leg. I pull it and apply pressure. And, of course we need to do another. She starts to get upset.

"You Can Do This," I tell her. Let's not let this become a big deal. Let's just get it done and move on with life and not let diabetes ruin the evening. She calms down, the new site change is done, and we move on.

"A boy at school said to me Oh, I'm high...Oh, I'm stupid...Oh, I can't take a test" Jess tells me. We have a 504 plan for the first time this year. If Jess's blood sugar is significantly elevated she defers major exams until it is in the normal range. It was the right thing to do. Taking an exam with glucose laced brain cells is not fair, and doesn't allow her to reach her potential. But, clearly other students have caught on to what is going on. "That must have been upsetting," I say to her..."How did you handle it?" Jess tells me she told him that she felt that was bullying and that he should stop. I am so proud of her..."Jessica!" I proclaim..."Wow...you handled that so well.....You Can Do This!" She beams with pride.

I wake at 5:30 am to prepare for the day. We find it is easier to manage Jess's numbers, and to ensure her school days are better if we pack her lunch every day. We spent hours researching the grams of carbs in the school lunches, but changes are made without notice, serving sizes vary, and to be honest, in a world where french fries count as a vegetable, I am happier just to have her pack. I hate packing her lunch. Measuring every blueberry on the food scale. Trying to balance a small treat with other food that has a low glycemic index so she doesn't spike too quickly. Making sure I put her post it note with the number of grams her lunch is in her bag. Checking her supply bag for lows, strips, a new tissue. It is a lot of work, and some days I'd love to just throw in a lunchable and call it lunch. I choose not to (this might work for some families) as I have seen in Jessica and Sean the difference high glycemic vs low glycemic foods make in their blood sugars. Some days I would give anything for a break.

"I Can Do This," I tell myself.

Blood sugars of 85 right when I had planned to go to sleep. Knowing that this means at least one more night check. Days with repeated unexplained episodes of hypoglycemia and knowing I'll be up during the night checking. Complete exhaustion. This is the life of every Type 1 parent I know.

"I Can Do This," I tell myself.

The hubby comes home from inpatient. "I admitted a patient in DKA last night," he tells me. Diagnosed at 12...now in her 30s. She just decided not to take insulin. I can see he is upset. And, I am too. How do we not worry this will be Jessica? People telling us "that will never happen to her...she is too smart," doesn't help. How can we possibly know how she will feel after living with this for 23 years by the time she is 30? I can not even begin to imagine how sick and tired she will be of it all. My heart breaks when I imagine the impact it will have on her in middle school, high school, college, and beyond. Site changes every three days for years and years. Multiple blood sugar checks a day indefinitely. Measuring every single stinkin morsel of food...or feeling guilty about it. The co-morbidity between diabetes and depression is huge. I hope we are giving her the tools she needs. I hope she sees that we are a team and always will be. My husband has told me how alone he has felt living with Type 1, how hard it was that when he was diagnosed he was old enough for it to be his disease alone, and what a lonely world that was. We have told Jess we will be there if she reaches a point where she can't do it another day and needs a break...no matter how old she is. We are Team Jessica.

"We Can Do This." My whole family can do this. In part, because quite frankly, we really don't have a choice. But, we CAN choose how we will do this. And, so far I am pretty darn proud of the way we are choosing to live. There is no doubt that this hated Type 1 impacts almost every hour of our life. But, we control it. We don't let it stop us. It may get each of us down at different times, but there is always a member of Team Jessica willing to pick that member back up. And, we are so incredibly blessed to have a big Team Jessica. Our friends and family who "get it." For every child that says something mean or rude to Jess, there are so many more who support her. For every grown up that says something insensitive, or fails to recognize how much work this is, and the impact it has on our lives, there are those that fill us with kindness and compassion. Our close friends, and members of the Type 1 diabetes community that we have yet to get to know well...they sustain us. And, we are showing Jess that she is not alone...it does take a village. And, most importantly I hope she sees that there is no doubt that she "CAN DO THIS!"

Friday, September 14, 2012

I'm running my first race tomorrow. It is just a 5K, but next is half of a half marathon (a little more than a 10K) and after that...well...who knows.

I started out doing it for Jessica. In my profession I get to see a lot of healthy and not so healthy people. If you take bad luck out of the picture, so much of what I see has to do with how people eat and whether or not they choose to exercise.

Like all T1 parents, I will do anything in my power to help Jessica live a long and healthy life.

So, I decided to set an example and when I turned 40 I bought a new pair of running shoes and hit the trails. I wanted her to see that I felt it was important. And, I have tried to bring her along too. We have run together some, and she seems to enjoy it. She eagerly entered the race with me tomorrow. But, then at soccer this week she told me she actually really doesn't want to miss her soccer game to run the race. And, of course I won't force her.

I almost cancelled entirely. And, then I realized that somewhere along the road of trying to be a good example for Jess, I have fallen in love with running.

It is the only time I get totally to myself. Well, of course I bring the dog...after all if I weren't multi-tasking by running the dog, then I'd be taking time completely to myself and then the mommy guilt would kick in!

I run through the woods, listening to the stream and the birds, and my steady breathing. I feel alive, healthy, and at peace. It has been amazing to test my old 40 year old s/p twin pregnancy body and see what it can do. And, it has amazed me.

And, I've realized that just as I so often tell my patients that they as caretakers need to take care of themselves, this is what running has become to me. A reminder that amongst all the focus on my daughter and husband's health, my health is important too and should not be neglected.

It feels odd to be going to a race tomorrow that is not a Race for A Cure or a JDRF walk. But, it also feels guiltily wonderful to be running tomorrow to support another valuable cause. For almost three years I have lived and breathed diabetes every waking and sleeping moment. And, I will continue to do so and continue to support and help my husband and daughter any possible way I can. I will continue to live in awe of all they must do and wish with all my heart that they didn't have to.

But tomorrow morning for a brief time it will be my time.

I don't know how I'll do tomorrow. As luck would have it I'm on call tonight. And, there's the stupid cold I have had all week.

But, if my daughter can be the leading scorer on her soccer team with a blood sugar in the 300's then surely I can do this one small thing.

Tuesday, September 11, 2012

First Halloween with T1- even broken pancreases can't stop the Halloween fun of carving pumpkins with Grandpa!

"Halloween is my FAVORITE holiday," her sleepy voice tells me as I tuck her in tonight. "I just can't wait...I love Halloween!" I smile with complete joy. Just a little under three years ago I was filled with dread while also trying to deal with all the emotions that surround a new Type 1 diagnosis. There is no good month to be diagnosed with Type 1, but especially for a small child October seemed particularly cruel. Jess had already picked out her costume. She was dreaming of candy, and ready for Halloween.

And, then her pancreas went on strike. And, I was left wondering...how do I deal with a holiday whose main focus is candy? Maybe if we had started Jess's diabetes healthcare with the team we have now I would have felt more supported. Her current healthcare provider would have insisted she eat the candy like the other kids, rather than instead giving us information on a program at a local department store where you can turn in all your candy for a small gift card. I am by no means disregarding this program, but what small child wants to take her bag of candy and surrender it for a gift card that doesn't even buy one real toy? I remember thinking "how am I going to pull this off?"

Panic breads creativity.

And, the Halloween Fairy appeared. Both Jessica and Courtney saved five pieces of candy and then decorated a bag to leave the rest of the candy for the Halloween Fairy. In the middle of the night while they slept soundly, the Halloween Fairy appeared leaving her magical pathway of glitter as she traveled across their bedroom. Taking the bags of candy, she left behind presents decorated in black and orange paper and lots of Halloween stickers.

I woke to the kids screaming with glee. "Mom---you were right---there is a Halloween Fairy!" They loved the glitter all over their floor and were thrilled by the presents.

Of course there were questions. Where had this fairy been before? Well, the Halloween Fairy only visits Type 1 children and their siblings, I explained.